 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Arthritis / January 2006opinions sought
Although I have read this groups posts for quite some time, I haven't posted anything in a long time. Every time I try, it seems to take too many pages to just explain the basics. I don't think anyone has any solutions for me, I feel bad enough & right now can't bear another person telling me I'm not good enough. Yet I feel so isolated and feel I am drowning in an endless vortex. I really want some connections to the outside world. I'm the sole caregiver for my husband , a 50-year-old brilliant, talented, productive man with Beckers Muscular Dystrophy. He needs round-the-clock care and I am struggling to provide it. I have breast cancer (dx-2002), degenerative arthritis, and failing vision. I'm only 56 but I am running out of time. I'm writing to get the perspective, regarding our situation, of people who address issues of disability, care giving and family support on a daily basis. He grew up in suburban Philadelphia as I did. We lived together just outside Philadelphia but have been stuck in Toledo, Ohio for several years. Due to the a complicated set of circumstances, we lost our condo and moved here for what was to be a short and temporary stay. Unfortunately, my husband's condition is progressive and we started needing an expanding net of physicians and healthcare providers. Then, in early 2000, my husband got ill and ended up with a tracheotomy and using a ventilator to assist his breathing. That meant more doctors and more equipment. (Between the two of us, healthcare involves more than 12 doctors.) So we're stuck in an house unsuited to my husband's needs and in an urban neighborhood that is spiraling downward. We have asked both families to help us. They steadfastly refused, citing one excuse after another, although they are well-able to help us without creating any financial hardship for themselves. Now, after I've lost almost 30% of my sight and he has become ventilator-dependent, they have said "...well, MAYBE, they MIGHT help BUT only if we move back to their area AND it must be done without any help from them". We would desperately like to return to the suburban Philadelphia, where there would be substantially better health care for both of us but, because of our financial considerations and the complexities of our medical care needs, moving away from this area has become an impossibility. I have no relief, my husband gets minimal care, and we're one accident away from catastrophe -- we literally know no one here and I worry constantly that something will happen to me and there's no one who will check on him (in which case he'll die a horrible, slow death alone and unknown) . There are no facilities for a person like him here except nursing homes where his brilliant mind would waste while he receives mediocre care and eventually dies. He's not ready for that and neither am I. I'm writing you in the hope of getting you opinion regarding our families' refusal to help. The last time my husband asked for help (I needed surgery), his father's response was this time he wouldn't help because our asking for help somehow didn't consider their feelings!? He then went on to say "Gee's (me) father said he will help you move back." Yet, when I asked my father, he had no idea what my husband's father was talking about. It was Lee's father's responsibility, he said, and they couldn't help if the in-laws wouldn't?! Catch-22! (I did not get the surgery) His family has always refused to make any plans for him, even though they knew he had muscular dystrophy since he was around 5. They were told when he would never live past his twenties. That was wrong. He earned two college degrees and worked for 9 years, always remaining fiercely independent. He never asked for their help and they never offered it. He just assumed they would help when he eventually couldn't remain independent and would need total care. That time is now and they still won't help. Both our families live in very nice homes, (My husband's parents just sold their $400,000 home & downsized to a new condo in the Delaware County suburb of Philadelphia & mine recently moved into a brand new $200,000+ home in a golf course community in Montgomery County, suburban Philadelphia.). We live in an @500-square-foot house I bought at a sheriffs sale. They sit on nice nest eggs. We have one working electric outlet in our kitchen, no bathing facilities for my husband and un-insulated house where my husband has to sit bundled in an electric blanket, wearing a hat & using a space heater so we can pay our heating bill. They have all their health needs met and I've lost all my teeth and my husband hasn't seen a dentist in 5 years. We spend almost half our income on medical supplies not covered by insurance or Medicare.With less than $20k a year income we still don't qualify for any financial or other services so there isn't any money to pay for any help of any kind. . They exercise regularly, dine out, go out to new places, etc. We haven't been to a restaurant, movie, or mall in the 9 years we have been here and, some months, we struggle just to have food to eat at the end of the month. They take vacations, window-shop, take daytrips, and are involved in a number of volunteer and social activities. Yet we languish. My husband hasn't left the house in over a year and I can only go out when it's absolutely necessary. I am so overwhelmed, the house is a chaotic mess, I can't see to do most things, the side effects of the cancer drug (arimidex) and my severe degenerative arthritis can seem debilitating at times and the feeling of being on the verge of disaster is weighing me down constantly. We have tried our best to cope, adapt, plan for each challenge, with our families not only refusing to help but actively sabotaging us at every turn. Ps: they barely have ever ackowledged I have breast cancer! and arthritis..." I'm too young, I'm just complaining too much" What do you think? What strategy(ies) would you employ? I know no one to ask here and, besides, I would like to know what people think in other parts of the country. You have my most sincere gratitude for whatever you can offer. sincerely, gee (of lee & gee) Gee, I wish I had some advice to offer but I don't. I just want you to know I saw your post and I am so sorry things are so bad for both of you. Maybe someone else will come along who will really be able to give you some help. I pray so. Gwen > Although I have read this groups posts for quite some time, I haven't > posted anything in a long time. Every time I try, it seems to take too [quoted text clipped - 104 lines] > > sincerely, gee (of lee & gee) This is only my own opinion, but if your families are unwilling to help, then I think you need to proceed as if they did not exist. You don't really have the extra energy to devote to them if they will not be a part of your lives. I only know what you have written here so I do not really understand you situation, but it does sound as if your husband might be better off in a nursing home than he is now. It would relieve you of some of the care responsibility. You could still see him every day and be sure his life is at least as stimulating as it is now. I do not know if you are involved with a church or if you ever have been. Many of them have telephone support groups that call each other once a day to make sure things are ok. I believe many senior centers would also have the same sort of arrangement. Are you both on social security disability? And have you looked into what government assistance is available for each of you? Your primary care doctor should be able to direct you to someone who can make sure you get the help you need and are entitled to. As with most of our problems in life, we have to accept the things we cannot change, stop focusing on them and shift our focus to what we can do and what we do have. Prayers on the way for strength and guidance. Jo > Although I have read this groups posts for quite some time, I haven't > posted anything in a long time. Every time I try, it seems to take too [quoted text clipped - 104 lines] > > sincerely, gee (of lee & gee) Dear Jo Firey: (I aplogize for the same message sent to you and Debbie m.--I don't know how one responds privately---email address shown under 'show options' apparently isn't a viable one---duh!) Thank you for all your comments. I did want you know why the "nursing home option" isn't a viable one. We have first hand experience with that. People think that it is a safety net, but it's an illusion if you are severely disabled and NOT ELDERLY. The nursing home industry in Ohio spends thousands of dollars on lobbyists both in our state capitol and in Washington, there is no one to match that money lobbying for disabled, (but NOT ELDERLY) adults* (physically disabled not cognitive disabilities). Every effort at both the state & federal level to fund attendant care programs and other programs to keep young disabled people out of nursing homes has more or less been defeated. Please read the enclosed info about what choices there are here. Everyone should know what really is our there. My husband being non-ambulatory, on a ventilator , oxygen and with a trach was in the very best nursing home our county has to offer--there are no public nursing homes here- all are private for-profit businesses. He would not likely have lasted more than a few months there, the staff told me they lose money on people such as my husband and they just can not thrive with the level ( or lack of) care they can provide. The letter I wrote after his last stay didn't even begin to scratch the surface of what went on there, and as you can see from the following article, things have not changed. LETTER I SENT: Sunday March 26, 2000 Administrator-Heartland of Browning Health Care & Retirement Corporation/HCR Manor Care 8885 Browning Dr. Waterville, OH 43566 Re: Leon Blackburn Heartland of Browning patient/resident Feb. 26, 2000-Mar. 27, 2000 Administrator: This is a formal statement which I wish to have included as part of your records regarding The above patient. Mr. Blackburn, my husband, came into this facility 30 days ago without serious skin breakdown on his posterior & buttocks, he leaves with major skin deterioration of this area. Within the first week under care here, I found him being left on wet sheets for two days, after which he consequently developed SEVERE skin breakdown. The level of care here is appalling, most nights I found two nurses having to care for 75 patients, many on ventilators, &/or frail. Many times there was no one available to enable my husband to defecate or urinate, let alone feed him. Countless times I found untouched cold food sitting on a tray at his bedside, either no one remembered to feed him or they were too busy. I constantly had to be there to do the job you have been compensated to do, either to assist him in eating or in elimination. The above incidents are only the tip of the iceberg, but I shall concern my statement of complaint to these specific matters & insist this statement/objection be included in your records. Sincerely, Cc: HCR Manor Care/ HCR Corporation Long Term Care Ombudsman Program-Lucas County & Columbus Ohio Ohio Department of Aging Ohio Department of Health-BLTCF State of Ohio Attorney General Betty D. Montgomery's Office Ohio Department of Insurance Senators: Mike DeWine, Gorge Voinovich & Rep. Marcy Kaptor State Legislators: L. Furney, R. Latta, J. Ford, L. Olman & J. Perry Not one of these people, agencies, public servants ever replied to me. A preventable death THE Ohio Department of Health reported what everybody didn't want to hear. A 49-year-old resident of a Waterville nursing home didn't have to die the way she did. Patricia Matney, who had multiple sclerosis and could not move on her own, died of hyperthermia after being left in a courtyard outside the Heartland of Waterville on a stifling hot day. Ms. Matney, a nursing home resident for the past four years, not only was allowed to sunbathe in soaring temperatures in apparent violation of the facility's own policy on extreme heat and humidity, but also was reportedly ignored by caregivers for more than an hour. The oversight is more than what the Heartland of Waterville calls an unfortunate, "isolated incident." It is outrageous. A woman is dead because nobody bothered to check on her in temperatures that exceeded the nursing home's own established safe range of between 70 and 90 degrees. The health department cited the nursing home for failure to monitor the woman as she lay on a blanket spread out on a concrete patio. The home also was cited for failure to develop a plan of care for sunbathing. The state agency that investigates nursing homes said temperatures on Sunday, June 26, ranged from 93 to 99 degrees with a heat index temperature ranging from 99 to 100 degrees. When Ms. Matney arrived unconscious at the hospital her body temperature was 109 degrees. State investigators believe it was even higher when Ms. Matney was finally discovered by nursing home staff. The nursing home, which changed its name from Heartland of Browning in early June, had said staff members checked on the woman several times the day she died. But health department surveyors concluded the staff couldn't verify that anyone checked on Ms. Matney for more than an hour in the late afternoon. In their report state investigators acknowledged that the nursing home had conducted its own probe of the matter that resulted in the dismissal of a nurse's aide and a reprimand for a licensed practical nurse. The facility also updated its outdoor/courtyard policy, trained staff in the revisions, and added provisions for some patients especially at risk of sun exposure. Members of Ms. Matney's family said they were most concerned that what happened to her would never happen to anyone else. They are relieved that the report supports allegations made about the questionable care of their relative. In the meantime, the family has filed a wrongful death lawsuit against the nursing home. Heartland of Waterville has 10 days to respond to the state's report, but for now it's painful to come to terms with the realization that Patricia Matney's death was preventable. No charges were ever filed against the nursing home by any local or state agency. The parent corporation is one of the biggest political contributors to the controlling political party in Ohio. Gee, I am so sorry for your situation. I've e-mailed you privately. Glad you stopped by. debbie m. Dear Debbie m: Thank you for all your comments. I did want you know why the "nursing home option" isn't a viable one. We have first hand experience with that. People think that it is a safety net, but it's an illusion if you are severely disabled and NOT ELDERLY. The nursing home industry in Ohio spends thousands of dollars on lobbyists both in our state capitol and in Washington, there is no one to match that money lobbying for disabled, (but NOT ELDERLY) adults* (physically disabled not cognitive disabilities). Every effort at both the state & federal level to fund attendant care programs and other programs to keep young disabled people out of nursing homes has more or less been defeated. Please read the enclosed info about what choices there are here. Everyone should know what really is our there. My husband being non-ambulatory, on a ventilator , oxygen and with a trach was in the very best nursing home our county has to offer--there are no public nursing homes here- all are private for-profit businesses. He would not likely have lasted more than a few months there, the staff told me they lose money on people such as my husband and they just can not thrive with the level ( or lack of) care they can provide. The letter I wrote after his last stay didn't even begin to scratch the surface of what went on there, and as you can see from the following article, things have not changed. LETTER I SENT: Sunday March 26, 2000 Administrator-Heartland of Browning Health Care & Retirement Corporation/HCR Manor Care 8885 Browning Dr. Waterville, OH 43566 Re: Leon Blackburn Heartland of Browning patient/resident Feb. 26, 2000-Mar. 27, 2000 Administrator: This is a formal statement which I wish to have included as part of your records regarding The above patient. Mr. Blackburn, my husband, came into this facility 30 days ago without serious skin breakdown on his posterior & buttocks, he leaves with major skin deterioration of this area. Within the first week under care here, I found him being left on wet sheets for two days, after which he consequently developed SEVERE skin breakdown. The level of care here is appalling, most nights I found two nurses having to care for 75 patients, many on ventilators, &/or frail. Many times there was no one available to enable my husband to defecate or urinate, let alone feed him. Countless times I found untouched cold food sitting on a tray at his bedside, either no one remembered to feed him or they were too busy. I constantly had to be there to do the job you have been compensated to do, either to assist him in eating or in elimination. The above incidents are only the tip of the iceberg, but I shall concern my statement of complaint to these specific matters & insist this statement/objection be included in your records. Sincerely, Cc: HCR Manor Care/ HCR Corporation Long Term Care Ombudsman Program-Lucas County & Columbus Ohio Ohio Department of Aging Ohio Department of Health-BLTCF State of Ohio Attorney General Betty D. Montgomery's Office Ohio Department of Insurance Senators: Mike DeWine, Gorge Voinovich & Rep. Marcy Kaptor State Legislators: L. Furney, R. Latta, J. Ford, L. Olman & J. Perry Not one of these people, agencies, public servants ever replied to me. A preventable death THE Ohio Department of Health reported what everybody didn't want to hear. A 49-year-old resident of a Waterville nursing home didn't have to die the way she did. Patricia Matney, who had multiple sclerosis and could not move on her own, died of hyperthermia after being left in a courtyard outside the Heartland of Waterville on a stifling hot day. Ms. Matney, a nursing home resident for the past four years, not only was allowed to sunbathe in soaring temperatures in apparent violation of the facility's own policy on extreme heat and humidity, but also was reportedly ignored by caregivers for more than an hour. The oversight is more than what the Heartland of Waterville calls an unfortunate, "isolated incident." It is outrageous. A woman is dead because nobody bothered to check on her in temperatures that exceeded the nursing home's own established safe range of between 70 and 90 degrees. The health department cited the nursing home for failure to monitor the woman as she lay on a blanket spread out on a concrete patio. The home also was cited for failure to develop a plan of care for sunbathing. The state agency that investigates nursing homes said temperatures on Sunday, June 26, ranged from 93 to 99 degrees with a heat index temperature ranging from 99 to 100 degrees. When Ms. Matney arrived unconscious at the hospital her body temperature was 109 degrees. State investigators believe it was even higher when Ms. Matney was finally discovered by nursing home staff. The nursing home, which changed its name from Heartland of Browning in early June, had said staff members checked on the woman several times the day she died. But health department surveyors concluded the staff couldn't verify that anyone checked on Ms. Matney for more than an hour in the late afternoon. In their report state investigators acknowledged that the nursing home had conducted its own probe of the matter that resulted in the dismissal of a nurse's aide and a reprimand for a licensed practical nurse. The facility also updated its outdoor/courtyard policy, trained staff in the revisions, and added provisions for some patients especially at risk of sun exposure. Members of Ms. Matney's family said they were most concerned that what happened to her would never happen to anyone else. They are relieved that the report supports allegations made about the questionable care of their relative. In the meantime, the family has filed a wrongful death lawsuit against the nursing home. Heartland of Waterville has 10 days to respond to the state's report, but for now it's painful to come to terms with the realization that Patricia Matney's death was preventable. No charges were ever filed against the nursing home by any local or state agency. The parent corporation is one of the biggest political contributors to the controlling political party in Ohio. Hi Lee and G,,,,, I do not believe I could stand being treated that way by family. I would send each a letter explaining why I needed help and what kind of help they might do. Those that do not reply,,,, I would never have any contact ever again. Those that offer help would still be in my family. I can read the depression and loss of strength in your words. You are being tested daily to see if you can do what must be done to continue to live. God gives me the strength to do what needs to be done and I take all of my thoughts in prayer to my God for answers. If you have this kind of belief, give that a try. Your husband is a lucky man to have you. Harv > Although I have read this groups posts for quite some time, I haven't > posted anything in a long time. Every time I try, it seems to take too [quoted text clipped - 104 lines] > > sincerely, gee (of lee & gee) > He grew up in suburban Philadelphia as I did. We lived together just > outside Philadelphia but have been stuck in Toledo, Ohio for several [quoted text clipped - 7 lines] > 12 doctors.) So we're stuck in an house unsuited to my husband's > needs and in an urban neighborhood that is spiraling downward. You start going around to every social service, social security, welfare, and charity and tell them you need help. You go around and bang on the counters and keep asking until you get it. You have a right to get the help you need. If all else fails you go downtown and stand outside the city hall with signs around your necks and invite the press. Someone in Toledo knows how to operate the system and you have every right to take advantage of it. I've done this sort of thing for my sister and it helps to keep asking. It isn't begging it's activism and you have to do it until you find someone who will do it fot you. Ask the Masons, the Church, the Communist Party, Acorn, and anyone else you can find.  SignatureUsing Opera's revolutionary e-mail client: http://www.opera.com/mail/ my thoughts and prayers are with you,although I really don't have any answers for you. I don't see how anyone's family can be so unthoughtful as not to help anyone in need of help, much less that they are immediate family. even a mans own son and daughter, unbelievable. May God keep you in his care Janice | Although I have read this groups posts for quite some time, I haven't | posted anything in a long time. Every time I try, it seems to take too [quoted text clipped - 104 lines] | | sincerely, gee (of lee & gee) Write a letter explaining the current diagnoses of both of you and the history of your conditions and problems so that you can send it to any agency which MIGHT help (it's better to send too many than not enough). List all circumstances, but only mention your families saying that they won't provide any assistance (if they won't help you move near them so they "might help", they're not providing assistance). Make sure that the letter includes all of your needs, your doctors and how to contact you. When you have a good letter, send it to every local, state and federal health, human or social service agency which provides service for your location. You might also meet the requirements of agencies for services to the aging. Also, contact all elected officials who have any connection to your current address (they have to be good for something), and any religious organizations or agencies you can find. Many religious agencies provide services for people of other religions without affiliation requirements. There are also quite a few newspaper, radio and local television reporters or "human interest" columnists who could help you find assistance. Even the ones who are not motivated by real concern might do something which they can use for advertising purposes. If they can use you, you can use them. If either of you were in the military and received a general or honorable discharge, you might qualify for Veterans' assistance. Some professional organizations or unions have policies of providing assistance to retirees, even if its just an introduction someone else who can provide service. The more you try the better chance of finding people who really care and will help. I wish you as much help as you can find, and if I think of anything else I'll try e-mailing it. Norman I also wonder about the Muscular Dystrophy association. I don't know what their mandate is, but it would not hurt to contact them. Perhaps they could at least point ypu in the right direction. Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB Please remove "Ima" to reply. I can't provide a lot of specific advice for which I apologize. The obvious thoughts are to check with local social service agencies and private organizations to see how they might be able to assist you. I know our hometown has a program where residents help poor or disabled or elderly folks with home repairs - something like that might help you out some with your living situation at least. Also, I'm thinking some of the foundations that deal with the illnesses you and your husband have might have some leads they can give you on where to seek help. You can check their websites for the "contact us" links and just copy your post from here to them. This may seem facetious, but I really am serious - as for your living situation, you all sound like good candidates for that Extreme Makeover, Home Edition show. If ou have a video camera or can borrow on from someone, I seriously suggest appling. Here's a link to the page about their application process. http://abc.go.com/primetime/xtremehome/casting.html Hang in there, and please post as often as you like. We all need support and some help getting through the day. That's what the group is here for. Nann Gee, you have gotten some good advice. I think the most important one right now is getting a medical history, a detail of financial circumstances and immediate and long-term needs written in a short, concise explanation. This will be something you will need with each group you contact. I recommend that you contact the council on aging for northern ohio. I have included the url for their website. http://www.aging.ohio.gov/about.html It is their job to help folks like yourself find out everything that might be available in your area. My closest friend here runs the local Council on Aging and they do an amazing job of helping people find the resources they need. They are like a clearing house. They look at your situation and know who or what it is you should contact for help. If they are half as good as the one here you will find the help you need. You appear to be a very strong person but it is clear you are also wearing down. I hope the Aging Council can point you in the right direction. My thoughts and prayers are with you this week. johnie |
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2008 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.